Where the Heart is

One local family crusades for their son, and reminds us all how important heart health is to the health of any family.

Written by Rosalind Fournier, Photography by Beau Gustafson

When Terri and Matt Carlson arrived at Citizens Baptist Medical Center in Talladega on September 14, 2010 for the delivery of their first child, Harrison, they had every reason to expect their baby boy to be perfectly healthy. There were no complications during the pregnancy, and all of the ultrasounds appeared normal. He was born at 12:06 p.m. a healthy eight pounds, one ounce and with 10 fingers and 10 toes.

Within 24 hours, however, their day of celebration had turned into a nightmare they never could have imagined. After doctors sent Harrison for an echocardiogram after detecting what they hoped was a simple heart murmur, they sent Harrison for more tests, instead he was being rushed via a critical care team to the University of Alabama at Birmingham for surgery to try and repair a congenital heart condition called Hypoplastic Left Heart Syndrome (HLHS), so rare it affects fewer than one in 4,000 babies. Essentially, it means the left ventricle of the heart is severely underdeveloped or missing. The prognosis was terrifying: without immediate surgery, he would die. And it wasn’t just one open-heart surgery he needed, but three, spread out over a couple of years—and even then, the cardiologist explained to Matt, children with HLHS have only a 10 to 14 percent chance of surviving to kindergarten age.

Matt, a former combat veteran, says there was no time to process his emotions; instead, he simply went into battle mode and tackled the first task at hand: informing his wife, who was still at Citizens Baptist in Talladega and knew nothing of her son’s critical condition, what was happening. He explained as best he could and within minutes, Terri had been discharged from the hospital and was on her way to meet Matt at UAB.

Six days later Harrison had his first surgery—the longest day of their lives, Terri says—but it went well, and Harrison rallied. “He was actually one of the fastest children to ever recover from the surgery,” Matt says. “For such a bad condition, his was really the best-case scenario for the recovery.”

On September 28, two-week-old Harrison finally came home for the first time. Part of his care involved checking his oxygen levels every day; while ninety-eight or 99 out of 100 is perfect for a healthy person, when Harrison first came home he averaged in the low 70s, and his hands, feet and lips were blue. But the couple settled into a routine as normal as possible under the circumstances, with daily weighing and rigid medication schedules, until it was time for Harrison’s second surgery, when he was three-and-a-half months old.

It, too, was successful and the Carlsons allowed themselves to experience what felt like a small but significant victory. His oxygen level following the surgery went up into the medium to high 80s, but there was an even more tangible sign of hope: “Coming out of that surgery,” Terry remembers, “his feet felt warm for the first time ever. It was just amazing.”

Harrison’s third surgery will take place sometime next spring, and in the meantime the Carlsons are just taking life one day at a time. Terri started a Facebook page (facebook.com/harrison.hlhswarrior) for Harrison as a way tell his story and to connect with other families of children with HLHS, some as far as Russia and England. She finds comfort in having a community that can relate to what her family is going through; they pray for one another, share battle scars, and generally provide support. For Matt, sometimes the information takes him to too dark a place. “When Harrison was first born, Terri would tell me about these other babies, and every time something happened to one of them I would transpose that on my son,” he explains. “I would picture him going into cardiac arrest or having water on his heart or needing a feeding tube…It’s not that I don’t care about these other kids, because I do, but I already know what the risks are. It’s very real in my head, and focusing on that makes me enjoy Harrison less.”

“For me, it’s the opposite,” Terri explains. “I don’t like to hear about the bad stuff that happens, but at the same time, I can be a comfort to their parents just like they’re a comfort to us.”

In fact, providing comfort to other parents—and helping in any other way possible to raise awareness about heart disease—has become a primary goal for both Matt and Terri. They are active with the American Heart Association, including putting together a team for the annual Birmingham Heart Walk, this year scheduled for Saturday, June 22. For last year’s walk, they appeared on WBRC Fox 6 to share Harrison’s story and help promote the cause, and the association designed a card featuring Harrison’s story for event donors.

“Anything we can do to help to bring awareness to Harrison’s condition, we’re all in,” Matt says. He points to a statistic that clearly never strays far from his mind: “Twenty-seven years ago, if you didn’t have this set of surgeries Harrison is having, within a week you had an 80 percent chance of death. Within 30 days, it was 100 percent. So the way we look at it is, if there hadn’t been the American Heart Association and people in this type of situation doing things like the Heart Walk 27 years ago, we wouldn’t have our son today. So we want to do what we’re doing right now so that 27 years from now we might have that kind of impact in the future.”

Matt Hooper, communications director for the Birmingham Metro American Heart Association, says that the efforts of families like the Carlsons help raise awareness not only for the specific heart conditions that have impacted their lives but heart health in general—a cause the association considers critical, given the statistic that one in three people who die this year will die as a result of cardiovascular disease of some kind.

He says he is inspired by the passion the Carlsons have brought to the cause. “They have been through so much,” he says. “But not only are they indomitable in spirit, but as a result of their passion about Harrison and his health, they’re also passionate about your heart health and my heart health. And they have always been willing to help us spread the message of the American Heart Association any way they can. They look at how far the treatment has come thanks to the work of others and want to pay it forward.”

Terri and Matt also know that in some ways, they’re among the lucky ones. Among children with HLHS, Matthew is rare in that he has never required oxygen or a feeding tube outside of the hospital. When you meet Harrison, in fact, only his surgery scar gives away his condition: he is an adorable, friendly, affectionate toddler living what appears from most indications to be a normal life. “We do everything we can to treat him like a normal child,” Matt explains. “Yes, he’s sick, but he’s still got to be a kid.”

Terri agrees. “Some days I’d love to keep him in a bubble, thinking, if he falls down and hits his chest, it could collapse because it’s basically being held together with a wire,” she says. “But you can’t do that, because then he’s going to miss out on life. So we’re not going to tell him, ‘no.’ And we take lots and lots of pictures, and we try to enjoy every second of him.”

Meanwhile, any day now the Carlsons are expecting not one but two new additions to their family—twin baby girls. Doctors have taken extra precautions to monitor their fetal development, but no matter what happens, the expectant parents are undaunted. “I hear people say, ‘Well, as long as they’re healthy…’” Matt says, clearly baffled. “I always say, ‘And what if they aren’t? Would you love them any less?’”

Harrison’s third surgery will take place at Children’s of Alabama next summer. Both parents concede this is the one they dread most, in part because they’ve been told to expect that Harrison will have be strapped down during recovery to prevent him from pulling out his tubes. To prepare, they’ve developed a family ritual. “We have a thing we do in our house where touching with one fingertip means, ‘I love you,’” Matt says. “We won’t be able to pick him up, but we hope that just touching him like that gives some kind of comfort.”

Though this will be the third of the required surgeries, the Carlsons are prepared for the possibility that more repairs may be needed later, and a heart transplant is always a possibility down the road. They read all the time, however, of promising research that may improve his future treatment options, including the possibility that a new heart could one day be grown from stem cells. And already, Matt says his understanding is that Harrison’s life expectancy now may be as long as 40 years—a far cry from the prognosis they received when he was first born.

“People wonder how we do it,” Terri says. “All we can say is one day at a time. You can’t dwell on what he’s been through and you can’t dread what the future’s going to bring. Then we don’t get to enjoy what we have today.”

Fighting for the Littlest Hearts

Pulse oximetry screening is a non-invasive test that estimates the percentage of hemoglobin in blood that is saturated with oxygen. When performed on newborns in the delivery center it is effective at detecting life-threatening defects which otherwise can go undetected by current screening methods.

Alabama health officials, advocates, physicians and the American Heart Association/American Stroke Association have banded together to promote oximetry screening in Alabama. As a result of those collaborative efforts, most of Alabama’s hospitals are already performing this life-saving screening. Hospitals not currently performing the screening are expected to begin in the very near future.

Just months after the efforts took place, Alabama’s pulse oximetry screening program found its first previously unsuspected infant with congenital heart disease. An Alabama newborn failed the screening and was found to have an often-fatal heart defect called Total Anomalous Pulmonary Venous Return. Fortunately the newborn’s doctors were able to treat the infant appropriately.

The AHA/ASA encourages everyone to get involved in the organization’s mission of building healthier lives, free of cardiovascular disease and stroke. Visit YoureTheCure.org and sign up for free to learn how you can advocate for a healthier community.